AVMs of the Cerebellum

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AVMs of the Cerebellum

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Members: 75
Latest Activity: on Saturday

Discussion Forum

Lump in throat?

Started by PKP. Last reply by Danijo Nov 22. 2 Replies

Does anyone else have a feeling that there is something stuck in their throat? I feel it sometimes, I thought it was allergies but remembered my doctor saying there was a link, between the AVM and my…Continue

Getting Groceries

Started by multistats. Last reply by Daniel Marcus Miles Sep 25. 11 Replies

When I was in the grocery store earlier today, I remembered the problems grocery stores provided. This problem was true of stores in general, but was particularly true of grocery stores. Those of us…Continue

Tags: grocery, stores, up, throwing, dizziness

still in coma

Started by ayshen Sep 7. 0 Replies

Hi, my 18th year old cousin had a AVM operation at left cerebral and shunt with coil are placed. Its been just over two months and she is still in coma. Is anyone have any idea if this is normal? as…Continue

dizzy and swollen

Started by Howard. Last reply by Boston Celtics Jun 17. 10 Replies

Hi, Howard here. I am now just about 6 months out from surgery. AVM repaired and Aneurism clipped. Both in my cerebellum. Still quite sick. Very dizzy most of the time which often leads to nausea and…Continue

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Comment by Julie on December 1, 2014 at 12:55pm
* not sure what I typed for auto-fill to fill in "indoor", but please ignore that word.
Comment by Julie on December 1, 2014 at 12:53pm
Hi -one of my OTs said this, too; however, my AVM bleed was in the right cerebellum, and my left-side is very, very partially paralyzed and have some indoor donated/twitchy movements and other ataxic-signs, so I'm starting to think that I'm just a freak-of-nature - in a good way.
Comment by duncita on December 1, 2014 at 11:23am

Suzy E-No problem! I just thought it was really interesting...


Moderator
Comment by Suzy E on December 1, 2014 at 10:27am

Duncita, I failed to mention that I got an email about your posting. Not magical by a longshot...lol.


Moderator
Comment by Suzy E on December 1, 2014 at 10:23am

Duncita... for the life of me I can not find your post about AVMs of the Cerebellum affecting the same side of the body. Regardless this may explain why one side has always felt different from the other even going on nine years now. Good information! Thank you for posting this... :)


Moderator
Comment by Suzy E on September 12, 2014 at 7:35pm

Even though we all have had AVMs in our cerebellum, each case is different. While we can relay our experiences, the AVM doctor probably has the best answers to your questions. And I concur with Ann that while it may be a bit more work on your part, a 2nd, 3rd, even 4th opinion can't hurt when it comes to your health (and especially if you feel like you are "in the dark"). Best of luck to you. :)

Comment by PKP on September 11, 2014 at 7:53pm

atnt...thanks, I cant seem to get straight answers, I understand that my case was presented to the neuro/vascular "team'" so it was collective choice, but I feel so in the dark.... was hoping this venue would offer some perspective.

Comment by Ann Ning Learning How on September 11, 2014 at 7:46pm

Hi, PKP - sorry, no insight on what will happen since mine ruptured without me knowing I had one. Just wanted to say - how 'bout a 2nd or 3rd opinion? Or perhaps you could press your Hopkins docs for answers… bye, atnt.

Comment by PKP on September 11, 2014 at 7:42pm

I was diagnosed about a week ago. Was told by Johns Hopkins a few days after MRI, CT, and Angiogram that they would not treat it based on location and size. That treating it would cause more harm than good. I do not know much at this point... have headaches, poor balance on left side and facial twitching. What happens with this? Will this just get worse?

Comment by Lulu on August 11, 2014 at 9:54am

Thanks so much for your message and your very kind words Suzy E. I really appreciate your support and this site so much. I think you are abslutely right about the positive attitude. It really does help. I'm sure this has played a large part in getting me through life so far. It was a huge shock when I first found out that I had Hydrocephalus and an AVM. I don't hear of many people suffering from both conditions. I worry a lot about both of them and wish I could just press a button and have them gone. But I have also sort of accepted them as part of me. Even if my AVM was obliterated the drs aren't sure if the Hydrocephalus would go. So I may be stuck with it. I have loved hearing your story and positive outcome. With very best wishes.

 
 
 

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